Do you have ADOA yourself, or do you have a family member with ADOA, and would you like to connect with a Spanish family familiar with the disease? For example, regarding doubts or to share experiences? Then please contact our Spanish contact person Pilar García. She is happy to speak with you.
Relevant organizations in Spain in the field of visual impairments and mitochondrial disorders
Currently, there is no specific organization or institution for ADOA patients in Spain.
ONCE – Organización Nacional de Ciegos Españoles
The main organization for the blind and visually impaired in Spain. Offers many services, such as education, rehabilitation, technical aids, communication, employment, etc.
Website: https://www.once.es/
Overview of centers: https://www.once.es/faq/directorio-de-la-once
FUNDACIÓN ONCE BAJA VISIÓN
This foundation was recently established on the initiative of the ONCE and has a clear goal: to improve the quality of life of people with visual impairment by promoting their social inclusion and full personal autonomy.
Website: https://fundaciononcebajavision.es/
Tel. +34 91 709 77 77
Email: info@fundaciononcebajavision.es
ACCIÓN VISIÓN ESPAÑA
Acción Visión España is a non-profit organization dedicated to the care and support of people with eye disorders. Its mission is to promote study, research, and societal, medical, and scientific knowledge regarding eye disorders, with the aim of improving the quality of life of those affected and defending their rights.
Website: https://www.esvision.es/
Contact: Hospital Clínico San Carlos Puerta G 8th floor, association office. C/ Professor Martín Lagos s/n. 28044 Madrid
Tel. +34 722 61 22 66
Email: consultas@esvision.es
TENGO BAJA VISIÓN
Website of the Tengo Baja Visión quality mark and the associated awareness campaign. An initiative of the Retina Gipuzkoa Begisare association. It aims to raise awareness of impaired vision and to improve understanding of and social interaction with people with impaired vision, regardless of the cause of their vision loss.
Web: https://www.tengobajavision.com/
Tel. 659 08 10 65 – 676 89 41 57
Email: info@tengobajavision.com
SOCIEDAD ESPAÑOLA DE ESPECIALISTAS EN BAJA VISIÓN – SEEBV
The Spanish Association of Specialists in Visual Impairment was founded as an association of eye care professionals with the aim of channeling the growing interest in the field of visual impairment.
Web: https://seebv.com
Tel. +34 611 679 383
Email: info@seebv.com
ASOCIACIÓN DE PROFESIONALES DE LA REHABILITACIÓN DE PERSONAS CON DISCAPACIDAD VISUAL – ASPREH
An independent, national professional association founded with the aim of serving as a point of reference for professionals, people with visual impairments, and their family members.
PUNT DE VISTA
A non-profit foundation established by people who have personally experienced or are dedicated to visual impairments. The foundation is committed to stimulating scientific research in the field of visual diversity and creating a world that is more accessible for everyone with a visual impairment.
Web: https://pdvista.org
Tel. +34 623 197 361
Email: hola@pdvista.org
CATALUÑA: ASSOCIACIÓ DISCAPACITAT VISUAL CATALUNYA B1+B2+B3
An organization in Catalonia that offers, among other things, support, tailored services, socio-cultural activities, rehabilitation, guidance, and accessibility.
Website: https://b1b2b3.org/es/inicio/
Tel. +34 93 447 04 04
Email: info@b1b2b3.org
ÁLAVA: ASOCIACIÓN ITXAROPENA
Itxaropena is the association for people with a visual impairment in Álava. The association is committed to supporting people with a visual impairment in social, family, school, and work areas.
Website: https://itxaropena.es
Tel. +34 945 28 93 42
Email: info@itxaropena.es
FEDERACIÓN ESPAÑOLA DE DEPORTES PARA CIEGOS – FEDC
Federation that promotes the practice of sports by the blind and visually impaired.
Website: https://www.fedc.e
Tel. +34 91 353 61 61
Email: fedc@once.es
Organizations / Associations in the field of rare or mitochondrial disorders
ASOCIACIÓN DE ENFERMOS DE PATOLOGÍAS MITOCONDRIALES – AEPMI
The leading association in Spain for rare mitochondrial disorders, which provides information, advice, and support and promotes research into these disorders.
Web: https://aepmi.org
Tel. +34 618 789 068
Email: info@aepmi.org
FEDERACIÓN ESPAÑOLA DE ENFERMEDADES RARAS – FEDER
FEDER's mission is to promote the rights of people living with a rare disease and seeking a diagnosis, by developing strategies that contribute to improving their quality of life.
Web: https://www.enfermedades-raras.org/
Tel. +34 91 533 40 08
Information and Guidance Service for Rare Diseases:
Tel. +34 91 822 17 25
Email: sio@enfermedades-raras.org
REGISTRO DE PACIENTES DE ENFERMEDADES RARAS
The goal is to maintain a reliable register of patients with rare diseases to promote high-quality scientific research and improve the understanding of these conditions. By registering, you help improve the visibility and understanding of rare diseases, making it easier to make informed decisions regarding the allocation of resources for patient care and support.
Web: https://registroraras.isciii.es
Tel. +91 822
Email: registro.raras@isciii.es
CENTRO DE INVESTIGACIÓN BIOMÉDICA AND RED ENFERMEDADES RARAS – CIBERER
The CIBER de Enfermedades Rares (CIBERER) brings together more than 50 research groups from across Spain, along with approximately 20 related clinical groups. We all share a common goal: to generate knowledge that helps improve the lives of people and families living with a rare disease.
Web: https://www.ciberer.es
Contact: Instituto de Salud Carlos III. C/ Monforte de Lemos 3-5. Pabellón 11. Planta 0 28029 Madrid (Spain).
Email: info@ciberisciii.es
ASOCIACIÓN DE ENFERMEDADES RARAS MÁS VISIBLES
National non-profit organization dedicated to improving the quality of life for people with rare diseases and their families. The organization was founded in 2022 with the aim of raising awareness about these diseases and improving access to the resources and services needed for the diagnosis, treatment, and care of those affected.
Website: https://www.masvisibles.com
Email: info@masvisibles.com
Other interesting links
CENTROS, SERVICIOS AND UNIDADES DE REFERENCIA (CSUR) DEL SISTEMA NACIONAL DE SALUD EN ESPAÑA
The CSURs (Centros, Servicios y Unidades de Referencia) are institutions of the National Health System (SNS) of Spain designated by the Ministry of Health to provide highly complex diagnostic or therapeutic care and techniques at a national level for rare or complex diseases, ensuring equality and quality of access for all patients, regardless of their place of residence.
More info: https://www.sanidad.gob.es/areas/csur/centros/csursns.htm
List of centers: https://www.sanidad.gob.es/areas/csur/centros/docs/Centros_designados_CSUR.pdf
ASOCIACIÓN ESPAÑOLA DE GENÉTICA HUMANA – AEGH
Scientific society dedicated to the advancement of human genetics in various fields: clinical, research, and education. The goal is to promote knowledge, innovation, and excellence in this field by stimulating specialized training, groundbreaking research, and continuous improvement in the diagnosis and treatment of genetic disorders.
Web: https://aegh.org Email: aegh@geyseco.es
How do you obtain a certificate of disability in Spain?
The disability declaration is an extremely important document for people with disabilities and their families. It legally recognizes the degree of disability and provides access to rights and benefits that promote equality and social inclusion.
Information about how to obtain the certificate:
https://www.discapnet.es/discapacidad/certificado-de-discapacidad
https://sede.mscbs.gob.es/ciudadanos/procAdministrativos.do?tipo=detallar&cod=022400
